Because it has been so long since my last update, there is a lot to cover. I'll use bullet points so you can read what is interesting to you and skip the rest.
Surgery - Caleb and I head to Ann Arbor on Tuesday morning. He will have pre-op testing on Tuesday (chest x-ray, echocardiogram, EKG, etc). On Wednesday, he will have a heart catheterization so they can get detailed pictures of his heart and major vessels. If everything looks good on Tuesday and Wednesday, Caleb will have surgery on Thursday. Caleb has had a little cold, but it is nearly over. We found last Tuesday that he has an ear infection (he gets an ear infection with nearly every cold, just like his older brother). I called the nurse in Ann Arbor and she said that the cold may delay surgery, but he is doing really well now, so hopefully that will not be an issue.
What the Surgery Will Do - This surgery will re-route the major vein from the lower part of Caleb's body (the Inferior Vena Cava) so that it will flow directly to Caleb's lungs. The surgery should increase the amount of oxygen in Caleb's blood because all of his blood will now flow through his lungs. Currently, only a portion of Caleb's blood goes through his lungs. This results in lower oxygen levels and causes him to be bluish. It is especially noticeable in his lips, fingers and toes. The estimated hospital time for this surgery is 10 days to three weeks. The length of time is dependent on how long it takes for his chest tubes to stop draining. You will probably learn alot about chest tubes in the next couple of weeks.
Caleb in General - Caleb is doing great. He is talking and knows hundreds of words, most of them appropriate to say in public. His heart does not seem to limit him at all. He loves to play outside, even in the cold. He runs and climbs and does all the stuff that little boys do.
Updates - I will be updating the blog again at least daily starting Tuesday. I will try to post updates on Thursday as we get information during the surgery.
My Excuse for Not Updating Sooner - Several other heart moms and I have started a support group for families in West Michigan. We have been very busy working on connecting with families and developing our support network. We have delivered bags to Helen DeVos Children's Hospital for distribution to families whose children are hospitalized for treatment for heart defects. To raise money, Phil, another heart dad and I are running the Fifth Third River Bank Run on May 11th. To date, the three of us have raised over $1600. This is what has allowed us to get all of the materials for our care bags. Training for the River Bank Run has been taking up some of my time too - the run is 15.5 miles. Not the best excuse, but I am sticking to it!
How the Big Three Are Doing - They are nervous, but doing well. They aren't necessarily worried about Caleb dying, but they are really worried about missing him. The last surgeries were when Caleb was so young and boring, they didn't really play with him at that point. Things are really different now, he is their little buddy.
Thanks - We are so very fortunate to have a tremendous support system. We have been surrounded by love and prayers from every direction and that has given us an amazing amount of comfort and strength as we head into this next phase. We truly appreciate everyone that is thinking of us and keeping us in their prayers.
Sunday, April 14, 2013
Thursday, January 17, 2013
We Have a Date
I talked to U of M yesterday and we set a date for Caleb's next (and hopefully last!) surgery. We will be in Ann Arbor on Monday, April 15th for pre-surgery appointments. Caleb will have a heart catheterization on Tuesday, April 16th and if everything looks good, the surgery will be on Wednesday, April 17th.
Tuesday, January 8, 2013
Update on Heart Stuff
Caleb had his routine 6 month cardiologist check up yesterday. His blood pressure, heart rate and EKG were normal for him. His oxygen saturation was about 80%. This is about what it was at his last appointment. His cardiologist said that his oxygen saturations will probably hold steady or continue to drop as he gets bigger and faster.
Caleb did very well at his checkup, but he is not a huge fan of the EKG. He did cry at first, but when the nurse brought out his favorite toy, the tears stopped. He even helped pull off the stickers.
Caleb's weight was 24.2 pounds and his height was 32 inches. That puts him at the 3.3 percentile for weight and 0.4 percentile for height. His cardiologist was excited that he was on the chart for weight. He is a good eater and will eat almost anything, although he prefers chocolate. It seems to be working for him. He can still wear 18 month pants and the 2T underwear I bought him for Christmas fall off, but we do get our money's worth out of his clothes!
The plan right now is to go ahead with his third stage surgery this spring, hopefully when the cold and flu season has wound down. With three older siblings in school, someone is usually sick in our house all winter long. We would like to have the surgery early enough so he will be healed well enough to enjoy his summer.
The cardiologist is contacting Caleb's surgeon and they should be getting with us soon to schedule the surgery. We will go to Ann Arbor for a heart catheterization and if everything looks good with his pulmonary arteries and lungs, the surgery should be the next day.
Scheduling an "elective" open heart surgery is more stressful than I expected. With the other two surgeries, they had to happen when they did and we didn't have any choice in the matter. This time, we have a say. Phil and I agree that Caleb is as strong and healthy as he can be right now and he doesn't seem to be suffering from the lack of oxygen yet, so now is the time. It will be nice to have the surgery complete because it has been on our radar for a long time now and is often in our thoughts.
Here are the surgery details. The surgery will involve re-routing Caleb's Inferior Vena Cava from his heart and sending his blood directly to his pulmonary artery which then flows to his lungs. This will result in all of his blood flowing through his lungs. Currently, only a portion of his blood gets oxygenated. This will improve his oxygen saturations, although they will probably never be as high as someone with normal blood flow. The good news is that there are alot of active people with this type of blood flow in their 20's that that are living normal, happy lives. It is anticipated that the hospital stay will be 10 days to a month.
I will post an update when we officially have a surgery date. Thanks for your thoughts, prayers and support for our family.
Caleb did very well at his checkup, but he is not a huge fan of the EKG. He did cry at first, but when the nurse brought out his favorite toy, the tears stopped. He even helped pull off the stickers.
Caleb's weight was 24.2 pounds and his height was 32 inches. That puts him at the 3.3 percentile for weight and 0.4 percentile for height. His cardiologist was excited that he was on the chart for weight. He is a good eater and will eat almost anything, although he prefers chocolate. It seems to be working for him. He can still wear 18 month pants and the 2T underwear I bought him for Christmas fall off, but we do get our money's worth out of his clothes!
The plan right now is to go ahead with his third stage surgery this spring, hopefully when the cold and flu season has wound down. With three older siblings in school, someone is usually sick in our house all winter long. We would like to have the surgery early enough so he will be healed well enough to enjoy his summer.
The cardiologist is contacting Caleb's surgeon and they should be getting with us soon to schedule the surgery. We will go to Ann Arbor for a heart catheterization and if everything looks good with his pulmonary arteries and lungs, the surgery should be the next day.
Scheduling an "elective" open heart surgery is more stressful than I expected. With the other two surgeries, they had to happen when they did and we didn't have any choice in the matter. This time, we have a say. Phil and I agree that Caleb is as strong and healthy as he can be right now and he doesn't seem to be suffering from the lack of oxygen yet, so now is the time. It will be nice to have the surgery complete because it has been on our radar for a long time now and is often in our thoughts.
Here are the surgery details. The surgery will involve re-routing Caleb's Inferior Vena Cava from his heart and sending his blood directly to his pulmonary artery which then flows to his lungs. This will result in all of his blood flowing through his lungs. Currently, only a portion of his blood gets oxygenated. This will improve his oxygen saturations, although they will probably never be as high as someone with normal blood flow. The good news is that there are alot of active people with this type of blood flow in their 20's that that are living normal, happy lives. It is anticipated that the hospital stay will be 10 days to a month.
I will post an update when we officially have a surgery date. Thanks for your thoughts, prayers and support for our family.
Nearly 29 Months Old - Little Boy Stuff
Because I have not updated in a while, there have been many new developments in Caleb's life. He is doing amazing and is a healthy little boy that enjoys doing little boy things.
Caleb got to participate in his second Dougherty Family End of Summer Tomato Smashing Event. This year he even got his own croquet mallet.
For Halloween, Maeve was a cowgirl and Caleb, Sam and Ella were a Mariachi band. Caleb even had a mustache. Unfortunately, drool is really hard on your mustache.
Caleb is now talking and singing up a storm. We understand more and more of what he says and he loves to sing "Happy Birthday". The words aren't quite right and he sounds like he has been drinking, but we know what it is.
Caleb has officially moved out of his crib and is sleeping in his big bed. He is doing really well with it. We have noticed that he needs his sleep more than the other kids did, but it does make bedtime and naptime easier. We have been told by other heart families and his cardiologist that this is common in kids with his heart defect and he will probably have more stamina after his next surgery. He goes 100 miles an hour all day long until naptime and bedtime and then he is ready to sleep.
Caleb is finally growing some hair. It is very fluffy and is always sticking out. He will be getting his first haircut shortly. That means he is nearly 2 1/2 and is just getting enough hair for a haircut.
We had a wonderful Thanksgiving and Christmas. The kids enjoyed themselves and made it through the two weeks off at Christmas with no bloodshed.
We are looking forward to a new year with all kinds of new adventures.
Caleb got to participate in his second Dougherty Family End of Summer Tomato Smashing Event. This year he even got his own croquet mallet.
For Halloween, Maeve was a cowgirl and Caleb, Sam and Ella were a Mariachi band. Caleb even had a mustache. Unfortunately, drool is really hard on your mustache.
Caleb is now talking and singing up a storm. We understand more and more of what he says and he loves to sing "Happy Birthday". The words aren't quite right and he sounds like he has been drinking, but we know what it is.
Caleb has officially moved out of his crib and is sleeping in his big bed. He is doing really well with it. We have noticed that he needs his sleep more than the other kids did, but it does make bedtime and naptime easier. We have been told by other heart families and his cardiologist that this is common in kids with his heart defect and he will probably have more stamina after his next surgery. He goes 100 miles an hour all day long until naptime and bedtime and then he is ready to sleep.
Caleb is finally growing some hair. It is very fluffy and is always sticking out. He will be getting his first haircut shortly. That means he is nearly 2 1/2 and is just getting enough hair for a haircut.
We had a wonderful Thanksgiving and Christmas. The kids enjoyed themselves and made it through the two weeks off at Christmas with no bloodshed.
We are looking forward to a new year with all kinds of new adventures.
Sunday, October 28, 2012
26 Months Old
Two years ago today, we brought Caleb home from the hospital after 72 days, four surgeries and enough stress to make a large amount of my hair to fall out. I never thought I would say this, but now our time in Ann Arbor seems like a dream or something that happened to someone else.
Caleb is still doing great. He is back to daycare now that the big kids are in school. He is talking all of the time now and sometimes we understand what he is saying. He is growing out of his 12 month clothes. He is still a flirt and far more outgoing than any of the older kids have ever been.
I realized how much we take for granted when we were on vacation a few weeks ago. We were swimming in the hotel pool and someone asked about his scar. At fun night at school last week, a little girl asked about his scar. Hopefully, Caleb will be proud of his scar. It comes up so high on his chest you can see it unless he is wearing a very high collar. I am assuming that being Phil's son, he will come up with some bizarre story to tell people. It will probably involve hand to hand combat or a shark attack. I am guessing that he will use it to his advantage with the ladies!
Friday, August 17, 2012
Two Years Old
Today Caleb is two years old. He is as normal as a two year old boy can be. He likes everything a little boy should like - dirt, rocks, mud puddles, dogs, cows, popsicles, etc. He plays in places he shouldn't like the toilet and the duck pond that Grandma Dougherty had at the family reunion.
Using the duck pond properly
Using it Caleb's way
Since the last post, Caleb has been to the pediatrician. He needed a check up before he could have sedation for his echocardiogram, and we were able to get his two year check up at the same time. For the first time in a year, he did not scream when we walked into the exam room. He didn't even cry when the doctor came in. He weighed about 22 pounds and was 31 inches long. This puts him a little over 1 percentile for weight and a little under 1 percentile for height. The nice thing is that we are really getting our money's worth out of his clothes. A lot of his 12 month stuff still fits. Again, the doctor was happy because he is still growing normally.
As far as we can tell, Caleb is right on track developmentally. The pediatrician said that he should be saying about 50 words, but we could expect less because he is a boy and the fourth child. We think he says at least 50 words, and so far, all of them are acceptable in polite company. I think the Big Three are working on teaching him some not so acceptable words, but so far, none have stuck.
Overall, he had a great appointment with no concerns whatsoever.
Wednesday, he had his sedated echocardiogram. He had an IV to put him out. The nurse got the IV in on the first or second poke. Caleb was not happy, but Phil and I were ecstatic that she was able to get the tiny vein in the squirming, screaming toddler. The good news is that Caleb has a couple of nice veins in his arms. Hopefully we can keep those working because a bunch of his other veins are toast from his earlier surgeries and procedures.
The doctor was happy with the echo and said everything looked good. His working valve is not leaking, he has good squeeze with the good ventricle and the pulmonary arteries are good sized and not narrowed. He does have a small leak around a patch that they had to put in during the last surgery to re-direct his blood flow, so that may be why his oxygen saturations have decreased. The patch will be removed during the next surgery anyway and he is growing and developing properly, so we are good to go for another six months.
It was interesting that when Caleb was sedated, his oxygen saturation jumped up to the mid 80's. When he is not running around like a madman, he is not using as much oxygen. Hopefully this means when he is sleeping, his body and brain are getting the oxygen they need to stay healthy and grow properly. Based on how well he is doing, I have got to think that this is the case.
We have enjoyed a great and very normal summer with our family. We can never thank you enough for keeping us all in your thoughts and prayers.
Since the last post, Caleb has been to the pediatrician. He needed a check up before he could have sedation for his echocardiogram, and we were able to get his two year check up at the same time. For the first time in a year, he did not scream when we walked into the exam room. He didn't even cry when the doctor came in. He weighed about 22 pounds and was 31 inches long. This puts him a little over 1 percentile for weight and a little under 1 percentile for height. The nice thing is that we are really getting our money's worth out of his clothes. A lot of his 12 month stuff still fits. Again, the doctor was happy because he is still growing normally.
As far as we can tell, Caleb is right on track developmentally. The pediatrician said that he should be saying about 50 words, but we could expect less because he is a boy and the fourth child. We think he says at least 50 words, and so far, all of them are acceptable in polite company. I think the Big Three are working on teaching him some not so acceptable words, but so far, none have stuck.
Overall, he had a great appointment with no concerns whatsoever.
Wednesday, he had his sedated echocardiogram. He had an IV to put him out. The nurse got the IV in on the first or second poke. Caleb was not happy, but Phil and I were ecstatic that she was able to get the tiny vein in the squirming, screaming toddler. The good news is that Caleb has a couple of nice veins in his arms. Hopefully we can keep those working because a bunch of his other veins are toast from his earlier surgeries and procedures.
The doctor was happy with the echo and said everything looked good. His working valve is not leaking, he has good squeeze with the good ventricle and the pulmonary arteries are good sized and not narrowed. He does have a small leak around a patch that they had to put in during the last surgery to re-direct his blood flow, so that may be why his oxygen saturations have decreased. The patch will be removed during the next surgery anyway and he is growing and developing properly, so we are good to go for another six months.
It was interesting that when Caleb was sedated, his oxygen saturation jumped up to the mid 80's. When he is not running around like a madman, he is not using as much oxygen. Hopefully this means when he is sleeping, his body and brain are getting the oxygen they need to stay healthy and grow properly. Based on how well he is doing, I have got to think that this is the case.
We have enjoyed a great and very normal summer with our family. We can never thank you enough for keeping us all in your thoughts and prayers.
Monday, June 11, 2012
Cardiology Checkup
Caleb had his checkup with the cardiologist today. He did pretty well considering he is not a fan of going to the doctor after all of his RSV vaccines this winter. He cried in the elevator, but had a ball running around the waiting room.
His EKG looked normal for him and his heart sounds good. The cardiologist wasn't terribly excited about his weight (a smidge over 21 pounds), but he said that he was ok with it if Caleb's pediatrician was. The pediatrician is ok with it because is growing right along the slightly less than 1 percentile curve. He isn't catching up any, but he isn't losing ground. Caleb eats very well, but seems to burn off everything he eats. He doesn't really ever sit still. He runs and then sleeps.
Caleb's oxygen saturations were not as good as they have been. In December, he was at 90% or so. Today, he was in the upper 70's. The cardiologist said that some kids do drop as they get more active and Caleb is not at a level that is dangerous for him. So for now, his body is not telling us the surgery has to be sooner rather than later. The timing of the surgery is still "elective" and we are thinking it will probably happen next spring. We want to miss the major winter bugs but give him time to recover so he can enjoy the summer. I do find calling open heart surgery "elective" a bit ironic!
Caleb will have a sedated echocardiogram (detailed ultrasound of the heart) sometime this summer. He has not had an echo since he was discharged from his last surgery in January 2011. While we are not keen on sedating him again, Caleb's fear of doctors and his active nature would probably result in 45 minutes of screaming - something none of us want to experience!
Overall, the appointment went well and hopefully the echo will show that everything is working the way it is supposed to be.
His EKG looked normal for him and his heart sounds good. The cardiologist wasn't terribly excited about his weight (a smidge over 21 pounds), but he said that he was ok with it if Caleb's pediatrician was. The pediatrician is ok with it because is growing right along the slightly less than 1 percentile curve. He isn't catching up any, but he isn't losing ground. Caleb eats very well, but seems to burn off everything he eats. He doesn't really ever sit still. He runs and then sleeps.
Caleb's oxygen saturations were not as good as they have been. In December, he was at 90% or so. Today, he was in the upper 70's. The cardiologist said that some kids do drop as they get more active and Caleb is not at a level that is dangerous for him. So for now, his body is not telling us the surgery has to be sooner rather than later. The timing of the surgery is still "elective" and we are thinking it will probably happen next spring. We want to miss the major winter bugs but give him time to recover so he can enjoy the summer. I do find calling open heart surgery "elective" a bit ironic!
Caleb will have a sedated echocardiogram (detailed ultrasound of the heart) sometime this summer. He has not had an echo since he was discharged from his last surgery in January 2011. While we are not keen on sedating him again, Caleb's fear of doctors and his active nature would probably result in 45 minutes of screaming - something none of us want to experience!
Overall, the appointment went well and hopefully the echo will show that everything is working the way it is supposed to be.
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